WHAT IS THE AVERAGE DURATION OF PMR BASED ON THE PEOPLE ON THIS FORUM? HAS THERE EVER BEEN A SURVEY OF THOSE PATIENTS WHO HAVE GONE INTO REMISSION? Thanks.
I think you'll find that most people on here still have PMR. Those that don't seem to drop off. But it's an interesting question.
There is a thread called club zero or something like that. I think it is pinned to the first page of this community. Maybe this is it.
https://patient.info/forums/discuss/zero-prednisone-discussion-450915
There must be a bell-curve graph of pmr duration published somewhere.
I suspect that the commonly referred-to "two years" would appear near the early end of the bell-curve, rather than at the "peak" of the curve. I suppose that "two years" might be a good, if optimistic, "estimation" for keeping patients feeling positive(?).
Personally I'd rather be told the truth at the start. That there's a slim chance it might be gone in a couple of years but it could potentially last your life time, on and off. I know I'm coming to terms with that now and making peace with my body. (And pred!) lol
I'm with you......at just under three years with PMR and I'm
79 yo I don't think I'll ever be pred free.....maybe reduce down
somewhat, I'm at l6mg now, but never totally off of it. LIke you
I'm making peace with that realization....
I`d like to make peace with being on 11mg after 4 years!....but I still have pain and restriction with stiffness....because of feeling like this, family and friends question me about it quite a lot....and really now, I just don`t have the answers!
Linda, it's interesting isn't it? I bet they wouldn't be quizzing you if it were another chronic illness, like diabetes, say.
Great idea! I suppose if someone knew how to set up a survey on survey monkey with basic questions, have the moderator approve it, then send it to everyone. I sure would be interested to know!
Exactly...I find it quite tiring!....
Hello to all on this thread. I agree it would be nice to see a survey about the average duration of PMR. I am at a year which is nothing compared to most here in the forum. The only way I found the truth about duration was by reading here. Even the medical information you search for when initially being diagnosed gives you no idea what you are in for. It was reading and discussing here that also made me realize I needed to make peace about being on the Prednisone and be prepared for the long haul. What that means for each of us will definitely be different.
I think Eileen mentioned something like 5 years in one of her comments a few weeks ago. I am sure if we were given a more realistic expectation at the outset we would be able to deal with things better and be determined to do the very slow reduction in pred instead of starting off with the idea we could reduce over 2 years to zero. It is only from this forum we realise our aim is to live on the minimum dose which gives us relief.
are you seeing a rheumatologist? If so I'm surprised they haven't suggested methotrexate to help you reduce the pred.
Hi, I haven't been on the forum for a while, but thought I would respond to this thread. I have had PMR for about 10 years.. I went two years off prednisone but had to start it back up. I can never get below 4mg without major setback so have learned to stay there. I have never had any problems with being on prednisone that I know of and have tried repeatedly to get off it. I recently had a bone density scan and will get the results on April 4. If I still don't have any problems I will probably stay at 4-5 and not try anymore to reduce. I am a 65 year old male and generally feel fine as long as I keep the prednisone going. I do not take calcium supplements as that leads to kidney stones. I will let everyone know how the scan goes.
If you take the right kind of calcium with the right kinds of symbiotic nuttients (D3, K2, magnesium etc) you would run far less risk of the calcium being deposited where it's not wanted.
Oh they have, it frightens me to try it....my sister was very ill taking it after just two tablets...messed her liver up and took some time to get right. She can take medication better than me, I have had fibro for many years, and really struggle just taking 1 paracetamol....I am also struggling with pred...many side affects....I`m still in lots of pain and stiffness, but just can`t keep raising it.....I am tempted to try MTHX but know pretty well what results will be. Have tried many things in the past for Fibro...and just can`t take the awful side affects.....I envy those that can take meds........so feel pretty well stuck, and don`t know quite what to do....going through bad spell at the moment....but hoping it will lift a bit soon....
Husband says...why take steroids if you`re still in pain....sometimes I think he has a point!....
I found some plant based calcium online and think that is
a better option than the other kinds of calcium. It also
contains Vit K and D. Hopefully it will help my bones
without doing damage.
Bravo! I would rather expect the worst and be pleasantly surprised than
be overly optimistic and be disappointed!😊
oh dear, your poor sister!
I'm on MXT and have had no side effects that I've noticed. I also have fybro and take Lyrica.
Have you tried steroid injections instead of tablets?